Happiness!!

Just thought I would give a quick little update and some pictures so you can see how well Miss Amelia is doing!!! We had clinic on Tuesday and things are still doing great. Her counts still continue to go up, we didn't get all of them or a definite figure, we will get the print out again next Tuesday. We were in the middle of dressing change, which is always stressful, but thankful we have it down to once a week with the new dressings that they have here at home! If they would have had these in Minneapolis we so would have done them!! But anyway back to the counts, the doctor popped his head into the door and said guess whose counts are above 100 thousand? So we were happy to hear that her counts are above 100!!!
She unfortunately got poison ivy from Nathan. Nathan got it about 2 weeks ago went to the doctor and got a shot and some medicine for it...his cleared up quickly, but Amelia's is taking it's time getting better. I guess that is just her slow immune system.
She is also off all of her fluids. The only thing she is getting through her line is her caspofungin. Knock on wood we are praying that pesky bladder thing is gone for good!!

Here are a few pictures:
This one is from right before transplant at this time her hemaglobin was about 5, becasue by the time we got to Minneapolis her HGB was down to 4.7!!

The one below is of her just about two weeks ago! Her hair is coming in so thick and fast! Also notice the beautiful pink lips! The picture above she was so pale. She looks so healthy today!

Here are a few from what we did this past weekend!

She found this Giraffe and we had to stop!

Nate was in his glory on the USS Alabama...

Mimi was not...lol

Thanks again for all the prayers they are appreciated!!

Blessings to all,

Kelly

Thank you!!

Thank you, Thank you....Thank. You.
Her chest x-ray was clear, I'm going to keep praying that it is just muscular!! She got her flu shot. Her counts are awesome!! Platelets 97!!! White blood is 4.4 and hemoglobin is 10.7!! She is looking great and feeling great. I won't breathe easy until I am 100% sure her shoulder is muscular!! But for now we will take it!
Blessings All!
~ Kelly

Prayers please!!

We are on our way to a regular clinic appointment at our local clinic. I am a little worried. Please say a prayer for Amelia today!! She has a little bit of a cough, which started a few days ago. Last night she came and told me that her shoulder was hurting really bad. My stomach was immediate knots. Please pray she does not have pneumonia or anything worse, please! I've been praying all night. She has been doing so awesome. I packed some clothes just in case. I hope I don't need them!! I'll keep you posted.

Blessings,
Kelly

Day +119

I found this and am posting it even though I don't have a child with cancer, but I do have a child with a terminal illness.

"Shoes"
I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them.

I get funny looks wearing these shoes. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes.

... To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt.

No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am.

I am a woman who has a child with cancer. I will forever walk in these shoes.

- Author unknown

I'm so sorry that I haven't been able to do a proper update, my laptop bit the dust so I am updating from my phone. We have been home for a little over a week now. Things have been doing good. We went to our home clinic last Tuesday and this Tuesday. Her counts are doing really well! I don't know the exact counts cause I don't get z print out of them here. Last week her platelets were 71 that's up from 57 when we saw the Dr on Thursday the 7th in Minneapolis. HGB was up to 10.? Up from 9.7 too. This week when we went to clinic he said they were same as last week. We have been going non stop! I think we were actually home this past weekend and got caught up on the laundry.....but again it is all piled up again.

Well I wanted to reassure everyone that we are well and we didn't fall off the face of the Earth. Busy, busy, busy! Hopefully I will getto do a proper up date from a real computer!! I will work on that tomorrow or Thursday!!

Blessings,
~ Kelly

On the road!!

Greetings from the road, we are about 122 miles north of St Louis. We are excited! Anelia is comfy in her seat watching Justin Beiber. She is hooked up to her nightly fluids,so we told her to holler if she needs to tinkle. Nathan already called us earlier to see where we were and to make sure we were driving straight through.
There are many tears of joy being shed. I am so grateful to Dr Wagner for all that he has done in his hard work to give my children and otherchildren with FA a longer, healthier life. I told him there will never be enough or the right words to thank him for my children. Next to my children he is also my hero!! Such a talented, caring and amazing man!
We will start a new journey when we gethome and get settled into a new home clinic. Dr Wagner said once a week to clinic, we are thrilled to hear that. We are praying that she won't need blood products any more, but know that until the HC goes completely away a transfusion may be in the future. Today's counts were really good too WBC was I think 3.6 hbg 9.7and platelets on her own were 57!! She is 100% donor with 70-80% cellularity. Her CD 4 is only 30, which is normal for this stage in BMT, but that means her immune system is still low and she must still wear her mask and avoid crowds and crowded areas, and any one who is sick in any way!! She will get a flu shot as soon as they are available. She will not be re vaccinated till June.
We already have our follow up appointment fir her 6 month check up scheduled for Nov 17th.
Thank you all for your support and prayers and thank you in advance for many more as we embark on a new journey and chapter of life after BMT! I'll try to post from home soon!!!
Blessings,
~ Kelly

Day + 103

Tomorrow morning we have our last clinic visit with our wonderful Dr Wagner! We have to be to clinic for 8:30 for labs and then at 9 we see the dr. We will then head back to the RMH to wait for our supplies of fluids for Ameliaand then we are hitting the road for about a 20 hour ride back to home sweet home! Please pray for us as we travel the straight through ride.

We are ready to be home, but nervous at the same time. There are things that we will miss and thinks we won't! Life will once again change again as we venture into more uncharted territory. She is not out of the woods by any means and will still be required to wear her mask, mostly every where she goes. Our house will be her one safe haven for her so we have asked people respect our request for no visitors right away till we get things settle. She still has no immune system and will need to get re vaccinated.
I will let everyone know tomorrow from the road.
Blessings,
~Kelly